Cynics say that no good deed goes unpunished. Their bitter wisdom is borne out by what is happening to hospice care, the gentle movement that has revolutionized the care of the dying.
Hospice, which began in England in 1967, operates on the principle that the dying have special needs and wants that busy hospitals and nurses preoccupied with tending the curable cannot provide. It offers the choice between accepting futile, "aggressive" measures in a hospital and being wrapped in kindness at home or in a hospice center.
Since its ministrations cost far less than hospital care and it is staffed largely by volunteers of the kind so encouraged by President Reagan, you might think that even Office of Management and Budget Director David A. Stockman's suspicious eye would have softened on seeing hospice's application for Medicare help.
But a look at the Health and Human Services Department's draft regulations, drawn up after Congress passed a bill to put hospice care within reach of more people, could lead you to think that hospice is being penalized for its extraordinary success in ministering to the terminally ill.
What is proposed, according to Hugh Westbrook, an official of the National Organization of Hospices, "would seem to help the program, while actually gutting it."
To begin with, the HHS, in computing Medicare benefits, spurned congressional figures and used its own. Congress ordered Medicare to pay 40 percent of the amount estimated for six-months' hospital acute care, which it figured to be $19,000. This would give hospice patients $7,000 to die as they choose. Instead, the HHS took $11,000 as its base and came up with $4,432 as the proper amount. Hospice authorities have been told that this can be adjusted.
What causes the anguish at hospice is the pittance given to hospice care units, which function as backups for the hospice patients, who spend their last days at home with the help of a team that is on call 24 hours a day.
Some 1,200 such units are operating around the country. The HHS has arbitrarily decided that they are no different from nursing homes. The HHS wants to give hospice patients the standard Medicare nursing home reimbursement--$57 a day. The cost at the Washington Hospice Center is $316 a day.
A brief visit to the Hospice Center is sufficient to tell that the HHS got it all wrong. There's a world of difference between the hospice and the nursing home.
At the Washington Home, the nursing home facility in which the center is located, the nurse to patient ratio is one to 20. In the center, it is one to three. There is also a social worker and a crew of 20 volunteers. Restless or confused patients are not tied down. There's someone there to hold their hands.
"The control of pain is where we start," says Elaine Sofair, a nurse who left hospital work to spend her time with the dying. From age 11, she remembers her mother's needlessly painful death. "We know more about pain control than anyone. We monitor them constantly; we know when it is coming; they don't have to wait."
What the center offers besides surcease from pain is liberation from hospital schedules and regulations and brisk cheery contradiction when the patient says, "I'm dying, I'm afraid."
"We can't offer them hope," says the unit director, Kristin Spector. "We offer them the hope of spending their last days the way they want."
Visits from children and pets are encouraged. Two German shepherds and a cat spent the night there recently. A last visit home to see the neighbors can be arranged.
One patient, an old jazz-player, wanted to hear his group one more time. A Dixieland combo came and played ragtime through the afternoon.
"Flexibility" is the watchword. Respect for the patient's wishes and decisions is the guiding spirit.
A majority of Washington hospice care recipients are cared for at home by teams. The proposed $57-a-day Medicare reimbursement is considered acceptable for them by hospice authorities, although the local cost for home care is $100 a day.
But for the backup unit, where some of them might have to go either temporarily or eventually, the money is almost worse than nothing. Medicare benefits could attract more patients who do not want to die in hospitals, but will not be able to find real hospice care.
"We just can't offer quality care at those rates," Spector says.
Leon Panetta, author of the hospice bill, went to call on HHS Secretary Margaret M. Heckler last week, and reminded her that she had co-sponsored it when she was in the House.
He got no commitment. Heckler is now in an administration where the concern for the unborn doesn't extend to the dying.